4 years of testing and doctors appointments, I was diagnosed with kidney failure. On 27th September 2013, I decided to initiate the transplant process. This is a blog detailing my experience of the journey I've undergone and will undergo.

Friday, 29 November 2013

The reality that on Monday I might be walking into hospital with a potential donor by my side is starting to hit home. I feel like I'm preparing for an intensive holiday. Of course, this might not be the case and we might have to keep on looking.

Either way, I find myself preparing for the hoooooooours of waiting from the testing to the actual recovery period.
I'm no stranger to waiting in hospitals. In fact, when something happens quickly, it actually throws me: 1) my second biopsy. We had a full day planned out, including parents picking us up from the hospital post a prior engagement. Ended up making our own way home as wasn't needed. 2) going for a blood test after work and literally walking in then out in 2 minutes. Now that's nearly unheard of!
Hospitals have a history of long waiting times. These can be for a number of reasons, some of them unforeseen circumstances. When they're 'patient actually doing badly' issues, I don't mind.
It's when I'm forced to wait due to admin error that I get pissed.
(On that note, I found this after writing this post: http://lolsnaps.com/news/84288/0/......another reason to try to not to feel frustrated when waiting at the hospital).

So, knowing I'll have a lot of waiting around, I've evoked the word of creativity in the form of film and literature and requested my friends throw their recommendations my way.

Oh, the flood gates! I now have a little booklet of titles I'm looking forward to either watching or reading when I'm in hospital. Some of them I've already seen, some I've heard of, others have my curiousity.
I've a mini-treasure trove! I may need to categorise them as watching a depressing film when I'm feeling blue might not be an ideal move. I'll save those for when I've focussed energy and I find myself wanting to watch something intense. Like those days you watch a scary movie just to give yourself a bit of a shock.

But having this list is actually making the transplant experience seem that little more exciting. I'm going to go through some uncomfortable stuff and having these things to look forward to will hopefully make them more bearable.
Not just for the waiting rooms either. Last time I had major surgery at 14, I spent a week in Intensive Care and as I began needing less sleep, I got SO BORED I used my breathing monitor as a form of entertainment. I also had a TV, but it was daytime TV so I spent most of that time, watching programs with my eyes glazed over.

SO! This time I wish to be prepared. I may be in hospital up to 2 weeks. I don't want to risk going nuts doing that time..

In other news, when my previous larp character went through a huge emotional horror, I decided I could either make her lose it and go a bit funny, or don armour and dive head first into doing something worth while. I figured I'd do the latter as it would be more productive for this particular character.
Despite having a huge urge to do so, I can't...really...don armour in real life, no matter how cool it would look. So, I decided to do something which sends out the same message as doning armour: getting a pixie cut. I've had long hair for a while...I'm about to undergo a huge experience. Might as well show I'm ready for it.

Transplant update: today it was confirmed that potential donors and I are going to the doctors on Monday to do compatibility tests. If there is a match, it's possible I'll have a transplant in 2014. A combination of 'oh cool' and a comedic 'ARGH' are currently in my head.

2014 is going to be a big one if this happens.

If we do find a match, I'm hoping the progression will help settle the lack of concentration/heightened memory loss/need for control which seems to have increased over time. I've developed some habits which I find particularly irritating:

I can ask the same question several times, but forget asking the question as soon as the answer is given. And I mean, several times

I'm now more aware of germs than before

My side seat driving is a hell of a lot worse than it was before (I combat this by sitting in the back seat so I don't keep squeaking or flinching when Tom drives)

I zone out during a conversation then can't remember what was said about 2 seconds ago, or the reason why I zone out. I then have to follow up with 'I'm so sorry, I didn't catch that last bit'. It's not because of boredom or disinterest. I just seem to develop a block for a second or two, then realise and pull myself back in. It's a little weird! One example: this evening, Tom spoke to the donor living team contact, then came and gave me an update. As he spoke to me, I actively felt myself zoning out and had to get pen and paper to make a note of everything he said so I'd take it in.

I'm usually quite a distracted person who gets confused easily anyway, but I think it's on the rise.
It's one of the reasons I'm looking forward to the transplant: I want to know if I'm actually like this or if it's due to the higher level of waste in my system compared to someone with fully functioning kidneys.

And finally, last night I dreamt I was being prepped for my operation. I think it may have been a combination of our light alarm turning on and bordering consciousness after a night of Night Nurse induced sleep.
Since I can remember, I've always had thoughts of waking during intense procedures. Literally every time I've had an op, just as I'm being put under, I imagine what it would be like for the anaesthesia to fail. I then wake up, out the operation, just fine and dandy.
It's not a FEAR worry, but a 'wow...can you imagine!'
I dreamt that I was being put under and that was my last thought before I actually woke up.

It wasn't til we got home, I had a mini 'my arm huuuuurts' whine and hug from Tom that we realised the irony of the t-shirt I'd chosen for the event; the t-shirt and jumper working together to create a wonderfully sad little image -

My donor list has been given to the living donor team. Now waiting for action. As I'm not an urgent case and I don't want anything huge done until 2014, they won't be in contact for at least a few weeks.

I recently received an e-mail from the nurse who supplies my anaemia injections, suggesting I ask my specialist about starting an Intravenous Iron Infusion treatment.
I'm informed, although my hemoglobin level is fine, there may be an issue with my iron level. She said it might explain why, despite weekly injections, I'm still very tired.
The iron treatment should reduce the number of times I need the injections and on top of that, I'll get a renewed burst f energy.
I'm happy to agree to this as I used to be able to run full pelt around a field and now I can't even walk up the stairs in my own home without getting out of breathe and light-headed? Come on.
My main concern is that the treatment will end up being a little like dialysis. However, this is based on worry, and vague online comments I've come across, so I'll leave any concerns to my appointment with the specialist on 15th.

And finally, my December meeting with the renal pregnancy consultant was moved to earlier this month due to a cancellation: an opportunity I grabbed with both hands.
Where the renal specialist gave a vague over view of what we could expect a pre-transplant pregnancy to bring, the renal pregnancy specialist filled in every possible blank.
What she said wasn't necessary fear inducing but made me think: 'yup...still shoving a new kidney in there!'

Basically, if I were to fall pregnant now, there would be a 50/50 chance everything could go wrong with the baby, preeclampsia being the biggy (http://www.nhs.uk/conditions/Pre-eclampsia/Pages/Introduction.aspx).
On top of that, my general renal failure could prevent the baby from receiving the full care that it needs, resulting in not just numerous health issues for both of us, but forcing the doctors to push the birth forward to save both myself and the baby, thus creating a premature child who would need even more assistance keeping alive. I would have to be seriously monitored throughout.
On hearing all the information the consultant had to give...and paling a little...I jumped in quickly as she took a breathe mid-sentence: 'this is before a transplant, I'm assuming?'
Pause.
'Oh yes, with a transplant, everything would be completely different and I'd be more than happy to encourage conception.'. I'd still need monitoring, but not half as much as if I fell pregnant now.
As long as everything was successful, not only would I feel a ton better, but my body would reach a new level of fertility and I'd be able to procreate as normal, with a now increased chance of a healthy baby.

How did I feel after this talk? Not much difference than what I felt before I went in. I'm now wiser, but it didn't really come as a shock as she just detailed what we knew.

I've also just been reminded I have my flu jab this afternoon. Commence feeling pretty pants for the next few days. Joy. But worth 'feeling a bit pants' against 'oh god I can't move and I'm dying'.

About Me

A creative individual, I tend to wear my heart on my sleeve. Fortunately, my sleeve contains my arm, which leads to my hand and has a direct link with my brain so I'm usually able to communicate the random stuff that goes on in my heart onto some interesting form of media whether it be design/art or random scrawling. It's handy